My friend John

[JennifersHope]

Hi,

I just wanted to ask you guys to keep my friend John in your prayers or thoughts...He has CF and recently started culturing Cepacia. He has rapidly declined and is now very very sick.. in the hosptial. He is on Bi Pap and still not breathing good.....

John is the most amazing person you will ever meet.. He is one of my closest friends and someone I love so dearly. In fact I don't know what I would do without him..He is very much a part of my everyday life. He is always there for me no matter what.. Always asking about my day, always willing to help solve any problem I have.. He is real good at that...he can fix something for me in a blink of an eye...he has taught me so many things from how to use my computer to spelling.. (which is my weak spot) One time I had trouble with some friends from school.. .he spent hours with me trying to help me sort things out.....I could go on.. and on...

Last year this time I was at his house.. He was not sick at all... He was ice kiting and playing hard with all his outdoor sports.. and now he can't even breath......

I can't tell you what it is like to be on the other end of watching someone you love suffer so immensley... It is the most helpless and horrible feeling in the world...all I want to do is go there and be there to help him.. and that is the one thing I can't do.....

So anyway... If you pray please pray. for a transplant center to list him somewhere and for him to have peace.... and for the feeling of suffocation to go away...


Thanks so much,

Jennifer

 

[Diane]

Oh Jennifer this breaks my heart. I will definitely pray for your friend John. I hope he can sort of rebound a bit and start feeling a bit better and breathing easier. I can't imagine how horrible it must be to have to sit there and watch and not being able to do anything, but by just sticking by him and being there for him ( even if it isnt being in the same room) you are helping him a lot. We are all pulling for him ................. <img src="i/expressions/rose.gif" border="0"><img src="i/expressions/heart.gif" border="0">

 

[Allie]

I'll be thinking of and praying for you and John. I know how hard it is to watch someone you care about go downhill so quickly, just hang in there hon, f you need anything, we're all here.

 

[JohnnaMarie]

John is in my prayers. You do your best to stay strong for him. Much love to you and best wishes to him for strength and a quick recovery. <img src="i/expressions/heart.gif" border="0">

 

[Emily65Roses]

I believe, if I remember right, your friend also has Medicaid for insurance? I faintly recall that I put him and Allan in the same category in my head. If there's any kind of afterlife, I bet we can count on Allan haunting the people in charge at Medicaid. Scare them into putting him on a tx list. That'd be funny, and sounds like the kind of thing Allan would do, if capable.

Either way, if there's anything we can do to help (like we tried with Allan), get ahold of media, or spread a website or phone number or whatever, let us know. It didn't work, obviously, but I had a lot of people curious about who Allan was when I was posting his links all over my stuff. I'm sure I can get people interested in John too. <img src="i/expressions/face-icon-small-smile.gif" border="0">

You know I don't pray, or I would. But he will be in my thoughts. Most of you guys usually are. Especially those that aren't doing so well. And John has been in my head since you first told me about him. Seriously, if there's anything I can do, say so. Even if it's just someone else for him to talk to (email or whatever) when he's bored, I'll do it. Whatever I can. <img src="i/expressions/heart.gif" border="0">

 

[JennifersHope]

Thanks so much for the replies.. Yes Emily this is the same guy that I was talking to you about... He does have Medicaid.. but that isn't even the issue at this point... We are unable to find any hospital that will list him.. The hospital where Allan was listed the UNC is no longer taking Cepacia patients at this time... they have had real poor sucess rates..... most ppl died before they made it to transplant.and their numbers dropped to low... they had to crack down...

JOhn has a wonderful family and from what I understand between all of them, they could pay for transplant... of course they would have to sell everything they own.. and would gladly do so....Drs did send out his case to a few hospitals that said they would look at his case.... but his doctor told the family that that is just a real long shot and that JOhn is endstage declining rapidly...I can't get the picture of him gasping for air out of his head... I know they started him on some narcotics to take away the air hunger feeling, but so far it isn't working... I am a bit angry.. because I know that they can make him comfortable and not feel like he is gasping for air....but so far not to much. is helping...

I can't talk to John anymore I have to talk to him through other ppl because he is to weak to talk... he did yell at me when he heard me crying on the phone.... he told me to "suck it up princess"" which is a line another little girl that died of CF used to say to us all the time...I am hoping that I will have the chance to speak to him directly... but I don't know..I would without a shadow of a doubt trade places with him in one second....

Thanks for letting me vent.. John did read on here a lot.. he often would tease me about some of my crazy posts I have made.... he just didn't post much..... though he has once in a while.. He doesn't want to be a complainer or seen as a whiner.. so he keeps a stiff upper lip...

Hope I have some good news to report soon.... Meanwhile.. I am sitting here feeling helpless.. He lives in Wisconsin and I in NJ so it is real hard to know if I should go there or not.... I would have to be real careful since he has Cepacia... but in a way even though he is surrounded by love.. I want to be a part of it..... though my own family would disown me if I actually did go..

Thanks again for being so supportive

Jennifer

It just freaks me out because this time last year when I was there he was ice kiting... playing outdoor sports and just fine...

 

[Emily65Roses]

This is, of course, a last ditch effort. But if they can't list him, or help him out... make sure he <u>demands</u> to at least be made comfortable. Allie talks to me about this. There is a point where it's okay to "give up." You want to fight as long as possible, but if, at the end, it's not doing anything but making the patient uncomfortable, stop doing it! Some people don't seem to ever get that. So if he gets to that type of position, make sure someone is helping keep him comfortable, at least.

Think about it for yourself, like I do when these type of questions come up. If it got to the point where NO ONE will list you, and you're down to the wire, wouldn't you rather be at home with your family in a place that's familiar to you, on pain medication.... than in the hospital hooked up to all sorts of stuff, uncomfortable, in pain, surrounded by strangers and sterile boring walls that are not your home?

Avoid that for as long as possible. In the meantime, look for other hospitals that might put him on the list, and all that type of stuff. Do they do it in any other countries?? What about living donors? Will they do it if he has living donors instead of taking organs that could potentially go to someone else? Just keep all that morbid crap up there ^^^ in mind for when it's necessary. And like I said, any ideas on what I might be able to do to help, just give me a shout.

 

[anonymous]

I will definitely be praying for John.
I don't know where he stands as far as transplant, but I saw a post on here from Greg Hon's wife and Greg has cepacia & was transplanted the end of October at Methodist Hospital (Clarian Health) in Indianopolis, so they may want to give that hospital a call if they haven't already.
Hope

 

[JazzysMom]

OH Jen....I am so sorry that U cant even talk to him now. I know it must be so hard not being able to at least hear his voice. My thoughts, love & prayers are with you to remain strong & for John to handle things well~

 

[cfmama]

I will keep John in my prayers.

 

[anonymous]

I was just wandering is he not on a lung transplant list yet, I figure he isn't since you said he had all of a sudden gotten sick. well if you dont respond I'll keep looking on the message boards for some updates ok.. I feel bad for you and him really really do. be careful bye,, Jeremy

 

[anonymous]

I'm not sure, but i heard that Toronto was one of the places that would do capecia patients? Is it possible for an American to get a transplant in canada? I'm sure it is....and especially if you pay for it?

God why do you have to pay for this crap anyways.....god America can be so stupid sometimes....no offence, but seriously, think about it....

Kiel

 

[Faust]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>



God why do you have to pay for this crap anyways.....god America can be so stupid sometimes....no offence, but seriously, think about it....



Kiel<hr></blockquote>


Isn't it wonderful? Trust me Kiel, this is just the begining of you seeing just how corrupt and utterly worthless many parts of this country is. I'm a patriot, but considering how capitalism has run so rampant against ideals and morals, and lobbyists still line the pockets of our most powerful men in this country, does it even remotely make you wonder why? While I love this country for it's virtues, and our binding love for each other, and I would personally give my life for it's protection and maintaining our way of life...This country, just like many countries, needs a LARGE purging of life. To me you automatically qualify for being expelled from humanity in general (regardless what country) when you demonstrate zero form of empathy for your fellow man, you demonstrate your only desire to elevate yourself, or you show just how you are intro cruelty in general, and can't even think. Sorry, you need to be removed if that's the case. Theres enough oxygen thieves as there is, we can't have them grow in proportion!

 

[Allie]

<blockquote>Quote<br><hr>make sure he demands to at least be made comfortable<hr></blockquote>

Yes, yes, yes,yes,YES. If and when he decides that it's time to call it in (up to him, and only him), absolutely maike sure that they are offereing a decent form of pallative care. The pallative care a lot of Cfers get, is, in my opinion, crap. But I won't go onto my soapbox here. But I'm one to suggest the 'give them as much as it takes' approach to comfort, while some people prefer to fight it till the end.

I hope it doesn't come to that, but if it does, you can always reach me for advice.

 

[Faust]

I love you Allie.


If you like me too, check either: Yes [ ] or No [ ]



I'm waiting for your note to come back to me! I won't be hurt, I swear!

 

[Emily65Roses]

Awww don't hesitate to grab the soapbox. Allie on her soapbox = AWESOME!!! <img src="i/expressions/face-icon-small-happy.gif" border="0">

Oh and PS-- Sean, you have very good taste in women. <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[SFLMAN]

I told my wife that if God wanted her to get new lungs she would and if she was going to be with her sisters in heaven it was ment to be I hope he gets the chance for tx soon and I will be praying for you both.I saw her fight with the Bi-pap the last few weeks and its tough.

 

[JustDucky]

Jennifer, of course John is in my thoughts and prayers...I know you must be feeling a bit helpless right now, but just being there for him is wonderful, you are helping him out more than you will ever realize. He knows he has friends in his corner, I also hope to hear good news from you soon....It breaks my heart to hear of someone who was so well to decline so quickly, it sounds like he has a strong soul though. Many hugs to you both....Jenn <img src="i/expressions/heart.gif" border="0">

 

[JennifersHope]

Thanks for your replies.. Unfortunatly JOhn has had another really horrible day... Today he spiked a temp of 104 and he also desaturated into the low 70s...and it made him delerious....

I didn't get to talk to him again..his family told me that they are giving him sedation.. I can't even imagine him on sedation.. Knowing John so well, I know how miserable he is.. He hates relying on other ppl to take care of him.. he hates sitting in bed... he is a go getter action packed kind of guy.

John is one of my best friends and I can't imagine him not being here.. So I won't I am going to believe that he is going to somehow pull through this...
He was so healthy not that long ago... I need him in my everyday life... I don't want him to suffer... I want him to take a deep breath and breath free... with out trouble.. Hopefully a transplant center will take him soon...

Thanks for letting me vent and thanks for praying for him... I am so overwhelmed at the thought of him suffering and I can't even talk to him... or make him better...

I swear this is the last time I get close to anyone with CF..I mean this close.. I can't bear it.....

Jennifer

Praying and Believing that JOhn is going to have a miracle...

 

[anonymous]

I am so so so sorry Jennifer. I know it is hard to watch someone you love with so much life have everything just sucked out of them by this stupid disease. I went threw this several times in middle and high school and came to the point you are at now. I haven't been able to let myself get close to another CFer since.
I pray your friend will get the transplant he so desperately needs. It brings tears to my eyes knowing the pain he must be in and you as well. Not that my next comment is what you want to hear, but even if he is not able to get the transplant that he is seeking, he will ultimately be able to take a deep breath and be free from the burdens and pain that CF has put on his body. He will be watched over and protected regardless of what happens. You, John and his family are in my thoughts and prayers, I wish the best and hope that you know even though you can not be with him physically I am sure he can feel the love you are sending to him. I am sure he is sending it back to you as well.

You are in my thoughts and prayers,
Lindsey
23 w/CF and CFRD